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how necessary is the Cunningham test?


laure

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I have had the Cunningham test kit for a month now. Tomorrow we go for dd9 blood draw to test chem levels and how well she tolerates her big abx regimen. If we are doing it, I would lump the test in along with this one. But honestly, parting with $400 now when a) the tests are not being moved through the lab very quickly right now, B) money is becoming an issue increasingly with these illnesses! and c) we are seeing very good results with lyme treatment, to the point where we will likely postpone or even cancel her first scheduled Ivig in late January.

Will this test give my doctors any information that could dramatically change treatment? We have positive lyme and anti dNase B titers that are high.

Thanks for all the wisdom - we are truly getting somewhere, finally!

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If money is an issue and you feel like your child is getting appropriate treatment already, I'd hold off on the Cunningham test. For us, 18 months ago, it got the ball rolling on treatment. But, I don't see how it would help your docs at this point.

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if you have people listening to you..

your getting treatment...

your seeing results...

i wouldn't...

i have now come to personally acknowlege i have 3 panda kids and not just one....

i don't think i will test them..

the fact that they repsonded to abx, is good enough for me...and i hope going forward for the docs...

so if they all go autoimmune...i dont think the test is necessary....

document...document....

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For what it's worth, when I first started on the forum, the Cunningham test was THE test to have --- do it, right away, etc. and it will tell if it's PANDAS or Tourette's/ocd. This was this fall. So we had it done. Dr. Latimer was not "sold" on pandas, even with a CamK of 168 (high pandas range) due to my daughter's handwriting not being horrible. She wanted to see anti-neuronals. AT that point, her antiD1 was 4 times mean, and she said that tics were likely her most troubling issue. Again, very true. Even Cunningham (I've spoken with her), when asked what these numbers mean, will say "We just don't know." So not to be negative about the test, but just not sure even Cunningham sees it as diagnostic??? It sounds like you are seeing improvement. I'd trade that for the Cunningham results any day of the week:)

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I agree with waiting.

 

Since you already have a lyme diagnosis...and we know that both PANDAS and lyme can elevate Cam kinase ll, if you do get a high value, it's not going to tell you if the elevation is from "just Lyme", or "Lyme plus PANDAS".

 

I think the test is most useful in cases where there is no Lyme and docs are saying "it's just tourettes" (esp. if there isn't much "evidence" of strep such as high strep titers). In that situation, an elevated CaM kinase ll may give you some evidence of PANDAS (vs. non-pandas tics, which tend to have lower Cam kinase ll activiation).

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For what it's worth, when I first started on the forum, the Cunningham test was THE test to have --- do it, right away, etc. and it will tell if it's PANDAS or Tourette's/ocd. This was this fall. So we had it done. Dr. Latimer was not "sold" on pandas, even with a CamK of 168 (high pandas range) due to my daughter's handwriting not being horrible. She wanted to see anti-neuronals. AT that point, her antiD1 was 4 times mean, and she said that tics were likely her most troubling issue. Again, very true. Even Cunningham (I've spoken with her), when asked what these numbers mean, will say "We just don't know." So not to be negative about the test, but just not sure even Cunningham sees it as diagnostic??? It sounds like you are seeing improvement. I'd trade that for the Cunningham results any day of the week:)

 

I suspect Dr. Latimer was looking at your dd's results as "a piece of the puzzle". The nice handwriting was another "piece of the puzzle" was that (unfortunately) swayed her in the other (non-PANDAS) direction. I think ultimately, running the test was to your advantage...since the high value at least made her consider PANDAS more thoughtfully than if the results were in the non-pandas tics range (or if you had not had run the test at all).

 

Perhaps Dr. Latimer would not have ultimately decided to treat your dd as PANDAS without that 168 CaM "piece of a puzzle"?

Edited by EAMom
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Well, when I brought in drawing samples for her, she got it:) My daughter is a drawer, not much of a writer, and to be honest, I don't know many 6-7 year olds who's handwriting is well-developed enough to say it's "good" or "bad." Plus, her name is all of 3 letters long---all easy letters. Not much in the way of a writing sample.

 

AT the same time, I am glad she looks closely into things, but I do worry that there are some infectious or immunological issues she might not be seeing or addressing, as it's just not her area of expertise.

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Just to put 2cents more of mine in....

the cunningham numbers concern me...

as ds first came up 105...that is still not normal...the range was considered like 120 or above...

so we redrew several months later after getting off taurine and he was really bad...i prayed...just let it be 130..so i can get help(i was afraid his 15 prior...strep, tic, abx, remissions((in that order)) was not going to hold weight)...

so then he came up 160.....i thought great...

now it has to be 160 or more....

 

my new panda kid ds8...got strep 6 weeks ago(he has had strep in 5 years though many ear infections)...ds10 ramped, ds8 stil held strong...i'm very happy...

well 4 weeks later that ds8 come home with another illness starts to tic 4 days later, as i posted here....got him abx...

i did ask him to write his name and some other words...his hand writing has always been impecable...but i cant' say it was much worse (just a littl off)(but he could have been in a rush to play with his new toy)....my handwriting stinks...catholic school with lots of home work has trashed it...

i am concerned that kids will be strewn aside if they don't have multiple conditions.

yes ds8 always seems more sensitive..but that is him...aaaannnnndddd he is sick...i am a grump when sick...

well long story...sorry...ds8 is in remission after 6 days of abx :D:wub::);):P;)

 

maybe the only pathway that is accessible to my children as a condition of pandas is the motor pathway..and would be diagnosed with ts(of cours ds10 now gets trich off and on...but that maybe that is opening other pathways do to so many expostures)...maybe if you always catch it early... you won't have more than 1 or 2 presentations of the condition

 

i am only putting this out there so not to eliminate anyone till they have had the access to at least trying all protocals to heal their child...wether considered minor or not...this is not pointed at anyone..just want all here to stay open minded and maybe the docs will too!!!!

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so then he came up 160.....i thought great...

now it has to be 160 or more....

 

 

Has a doctor told you it must be above 160 to be considered PANDAS? Sorry, I don't quite understand, can you please clarify? Thanks.

 

 

i recently read a post......that says something to the effect that 130 isn't so relavant anymore the new "pandas" number is closer to or is 160...i believe i read it was in the last week or so.....

 

if i read that wrong i apologize.....i will hunt for it..maybe it was something more direct from cunninghaam.....not trying to put words in mouth....but pretty sure that is what i read recently....

 

if anyone knows what i'm refering too....please post here...i would like to reread it too...

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found it..

 

http://www.latitudes.org/forums/index.php?showtopic=11403&start=0&p=95871&hl=cunningham&fromsearch=1entry95871

 

soo..it seems like they raised the range.....and it may be considered iffy...if below 155??? affirmative if above...??

 

to me.....cam is marking an infection....to me...if it is above normal ie 85-95....something is going on....i don't think that number is going to indicate if YOUR child will react with a panda/pitand display....

if your child exhibits any of the conditions...to me...that is panda pitands...the numbers will not tell if your child has the condition...it will only tell you if your child is ill...clinical presentation tells you if it is pit/pans...JMHO

since they cant seem to pin it down...and since my ds at 105 still had some mild tics...something was still circulating...so any panda kid at 105 could possibly still be presenting because that is how his body reacts....at 160..he was almost homebound and debilitated.....

i don't know that a "normal" child at 160 would present the same way.....or other than sick..ie sore throat, fever...

i hope that helps to make my point easier to understand....

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found it..

 

http://www.latitudes.org/forums/index.php?showtopic=11403&start=0&p=95871&hl=cunningham&fromsearch=1entry95871

 

soo..it seems like they raised the range.....and it may be considered iffy...if below 155??? affirmative if above...??

 

to me.....cam is marking an infection....to me...if it is above normal ie 85-95....something is going on....i don't think that number is going to indicate if YOUR child will react with a panda/pitand display....

if your child exhibits any of the conditions...to me...that is panda pitands...the numbers will not tell if your child has the condition...it will only tell you if your child is ill...clinical presentation tells you if it is pit/pans...JMHO

since they cant seem to pin it down...and since my ds at 105 still had some mild tics...something was still circulating...so any panda kid at 105 could possibly still be presenting because that is how his body reacts....at 160..he was almost homebound and debilitated.....

i don't know that a "normal" child at 160 would present the same way.....or other than sick..ie sore throat, fever...

i hope that helps to make my point easier to understand....

 

Yes, but when I read that, there wasn't really anything new in the numbers. Nowhere does anyone say that below 160 is not PANDAS. There just seems to be a Lower, Middle, and High PANDAS Range. And If you look at the chart on page 3 figure 2.2b of the JNI article by Dr. Cunningham, then you will see even normal sera tested as high as the 130 range.

 

I think the Cam K score needs to be used as a piece of the puzzle at this point because it is still being studied as to what it may really mean.

Edited by Kayanne
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